Pennsylvania tells Autism Speaks to stop talking

Jul 3 2008

Yesterday in a historical and unprecedented move, the Pennsylvania legislature voted nearly unanimously in the affirmative for House Bill 1150 to mandate commercial insurance companies to cover some services for children with autism.

The bill, introduced by House Speaker Dennis M. O'Brien, requires insurance companies to cover up to $36,000 of autism-related treatment for individuals less than 21 years old.

In nearly one full week of roller-coaster negotiations with the House Banking and Insurance Committee, headed by Senator Don White, the bill was stripped of all useful language, leaving Pennsylvania children with autism vulnerable to denials of coverage. House Speaker O'Brien, along with Pennsylvania Governor Edward G. Rendell and Secretary Estelle Richman of the Department of Public Welfare joined in condemning the gutting of the bill. "The current version of HB 1150 may look like it gives coverage to families affected by autism, but it's an illusion. This version will actually hurt some families who have kids with autism. This risk is unacceptable," said Speaker O'Brien in a statement released on June 29, 2008.

Autism Speaks, a national organization that conducts fundraising for research, and their paid lobbyists from Ikon, Inc., made several back-door concessions on the bill without the consent of Speaker O'Brien. In an unparalleled move, the entire Pennsylvania and national autism community stood in unity to support Speaker O'Brien to say "Only the Speaker Speaks for me." Over 62 organizations across Pennsylvania and nationally converged to show support for the Speaker, who has a nephew with autism.

"This is an amazing effort on the part of the entire autism community to tell Autism Speaks that the children come first, not politics," said Cindy Waeltermann, President of AutismLink, a statewide Pennsylvania autism advocacy and information organization. "I think it is abundantly clear that Autism Speaks is not speaking for Pennsylvania. I've never seen this type of grassroots activity in all my years in the autism community. This level of unity definitely sends a clear message, but is Autism Speaks listening?"

State Senator Jane Clare Orie, head of the Pennsylvania Autism Caucus touted the document as "a gold standard of care" for Pennsylvanians.

"Only with Speaker O'Brien's amendments, does HB 1150 become the strongest autism insurance legislation in the nation," said Karen Woodings, former president of the Autism Society of America, Greater Harrisburg Area Chapter. "I find it difficult to comprehend any autism organization not supporting the Speaker's desire to pass the strongest bill possible. I was proud that the Autism Society of America stood firmly behind Speaker O'Brien on a local, state, and national level. The support of Pennsylvanians affected by autism enabled Dennis O'Brien to fight for his bill and leave a legacy that will last far beyond his time as Speaker of the House."